Managing Editor's Note: I live just ten miles from Milford, CT, where a beautiful young woman was slain with a knife by a classmate on Friday morning. Her story was on every news outlet before she took her last breath at Bridgeport Hospital's trauma cennter. She matters. Her story matters. Her death is a tragedy. Below we have a story of a young woman you've likely never heard of - her name is Lorrin Kain and she too matters. She suffered a vaccine injury and well, you can see the results. As we wind down this autism awareness month - which has been hijacked by the vaccine protection police known as media, bloggers, government employees and industry PR folks, we think it's important to remember that nothing is black and white. Think for yourself. Today? We think of Karen Kain and her daughter Lorrin. Buy the book - leave it in your pediatrician's waiting room. Take it out of the trash can. Put it back in the pediatrician's waiting room.... Yesterday kicked off the TWENTIETH "National Infant Immunization Week." National Infant Immunization Week (NIIW), set for April 26 – May 3, 2014, is an annual observance to highlight the importance of protecting infants from vaccine-preventable diseases and celebrate the achievements of immunization programs and their partners in promoting healthy communities. 2014 marks the 20th anniversary of NIIW. Since 1994, hundreds of communities across the United States have joined together to celebrate the critical role vaccination plays in protecting our children, communities, and public health.

Twenty years ago today, the life of tiny Lorrin Danielle Kain was changed forever. She was just six weeks old the day her mother took her in for a well baby checkup that included a DPT vaccination. This vaccine profoundly and permanently disabled Lorrin, and at the age of 15, after a lifetime of illness, she died.

This book is the story of both Lorrin and her mother. I got to know each of them through this extraordinary account of a mother's undying love and her child's inspirational life.

I first met Karen in Chicago in 2011 at Autism One and I was with her again in 2013. We’ve stayed in touch, and while her book not about autism, it is a story that many parents in the autism community can relate to. What happened to Lorrin because of a vaccination is what countless autism parents testify happened to their children.

Karen wrote, My daughter, Lorrin Danielle Kain, received her DPT shot on April 27, 1994, at six weeks old. After the doctor administered the vaccine, she fell fast asleep. I woke her not long after to give her Tylenol as recommended, and she went back to sleep. . . . Two hours after the vaccination, Lorrin woke up screaming and crying. Little did I know, our lives were about to drastically change forever.

Karen described the extent of her daughter’s initial vaccine injury. Her hands were repeatedly clenching and opening, her eyes were blinking rapidly, and from her month came a high-pitched screaming. Lorrin was admitted to the ICU. It was the beginning of a lifetime of uncontrollable seizures.

Lorrin’s injuries included extensive brain damage and debilitating physical problems. She was left blind and had only partial hearing. She suffered from severe seizures. She was non-verbal and had spastic quadriplegia which left her totally dependent. She endured countless hospital stays, including months spent in the ICU, deep comas and months of life support. All of this was the result of a vaccination gone wrong. Lorrin’s doctors and the federal government agreed that the DPT vaccine had caused her medical conditions and she was awarded compensation, although it took almost four years for a settlement to be reached.

(It should be pointed out that neither the vaccine maker nor the doctor has any liability for side effects from vaccines. They are protected by federal law. Instead, parents like Karen have to appeal to an arbitrary program called the Vaccine Injury Compensation Program, where there are no precedents set and each case is a personal struggle against a system set up to protect the vaccine schedule.)

Karen described what getting compensation for Lorrin was like:

The government makes it as difficult as possible to qualify for compensation and they do everything in their power to avoid paying you. . . .

Usually, the trial is so drawn out that by the time an amount is awarded, the parents of the injured child have been beaten down financially, physically, and emotionally, leaving them no choice but to accept the government’s offer.Having the government recognize that the DPT vaccine had injured her daughter was only the beginning for Karen. How a parent spends the money awarded is heavily scrutinized.

The hardest part for me was trying to identify what expenses I might need for Lorrin during her lifetime. As parents, we always hope for the best possible outcome for our children, but in this situation, optimism can undermine the only means of getting compensation. That said, how can anyone possibly know the entire future of a child who is so young? Lorrin was so very sick, but I could never have imagined that her medical needs would be as demanding as they were through her lifetime. Though no one can really know for sure, a lifecare planner can help put together a list of what a child might need. Once the compensation is agreed upon, the funds go into a trust. The compensation, known as an annuity, is distributed every year.

Karen explained what she was up against, including the demands of someone referred in the book to as “Nurse Ratched.”

We met at Lorrin’s attorney’s office. The attendees included the Special Master, the stenographer, me, Tom, our life-care planner, and the government’s attorney, nurse, and pediatrician. It was one of the worst days of my life. I had to sit with what looked like civilized people and discuss my daughter’s future as if she were a burden on society. Before we even started discussing compensation, the government representatives

told us we had to place Lorrin in a home. We refused and the argument escalated from there. Our life-care planner had determined eighty-five essential items for which we asked compensation. It took three long days to go over the items in question. We asked for item number one, the government said no, and the process dragged on.

The Judge accepted the cost for Huggies wipes. You can only imagine what we went through discussing the other eighty-four items in question. We asked for wheelchairs, computers, a special bed for Lorrin. It was exhausting and completely out of any realm that I could wrap my brain around. Lorrin was my baby, and I hoped she would never need a wheelchair or a hospital bed. At the end of each day, I had to go home and care for my baby whose body was brutalized by the seizures she had suffered that day.

After the litigation came a horrific but real part of pursuing Lorrin’s case: the government delayed payment, anticipating that she would die. Her death was expected by all her doctors, and I’m sure that was written all over her medical files. Lorrin’s prognosis was grim at best. She was just money being spent, so the government looked for every excuse to deny it.

Karen described to me how she was treated by the medical establishment following her daughter’s vaccine reaction.

I understand why most doctors didn't want to talk to me about what happened to Lorrin. They would be threatened and looked down upon by their peers for talking about vaccine injuries. It's obvious that kids have injuries from vaccinations otherwise there wouldn't be a federal compensation fund.

A children's hospital brain surgeon told me, "There will never be a cure for your daughter because they will never admit that it happens."

The government agreed that Lorrin’s condition was the result of her vaccination in 1994. Formally acknowledged by 1995, it took over three years for them to decide what her life was worth. Karen told me that Lorrin’s critical condition made everyone think she could die at any time. The government kept postponing the settlement because if she died, the death benefit would be only $250,000.

No one from the vaccine program ever contacted Karen to investigate the specific circumstances of Lorrin’s injury. Those in charge of vaccine safety did nothing to make sure that whatever happened to make Lorrin so sick, didn’t happen to anyone else’s child.

Parents reading this book will naturally think of their own children. I know I did, especially because I’m the mother of two girls myself. Throughout the book, as Karen described the suffering and struggles both she and her daughter endured, I couldn’t help but ask myself, “What if that had been my Laura? What if it had happened to my Kate? How would I have faced the responsibilities that Karen did for fifteen years?” The overwhelming needs of Lorrin took a heavy toll on Karen, including the ending of her marriage. So much of what Karen endured, she went through alone.

Lisa Joyce Goes, a contributing editor at Age of Autism and a co-founder of the Thinking Moms’ Revolution, wrote the foreword for the book. Like me, she first met Karen Kain at Autism One in 2011 where Karen talked about what happened to Lorrin because of her vaccine injury.

In the forward Lisa wrote: Over the years, I have come to know Karen Kain as a person of extraordinarypurpose and character. If you are reading this book, the same can be saidof you. Many people walk away because the truth about what is happening to the children of this country is so incredibly hard to face. Like Karen and me, you will be forever changed.

But, you will also have the glorious honor of being captivated by Lorrin, her choices, her journey, her beautiful yet broken body, her limitless spirit and love for us all. You will grow in respect and admiration for Karen as she shows us what it really means to sacrifice, love, live a full life as a caregiver, but very much remain human, a woman who still has dreams in the midst of navigating an unpredictable life she did not choose.

I can’t tell you how many times I cried while reading Karen’s book. It’s hard not to when learning about a beautiful child living an extraordinarily difficult life. Lorrin never talked or walked, but because of the ceaseless efforts of her mother, she was able to have many of the precious experiences of a normal childhood. There are accounts of sleepovers, horseback riding, a service dog named Nicolette, a wonderful best friend named Sarah, and participating in the Miss Preteen Pasadena Pageant with 240 other girls.

My story is about the brave and loving ones who showed up in Lorrin’s life and took the opportunity to see the world through different eyes. Lorrin only saw love. If you spent any time with her, she would convince you that she had a secret love and faith in God. She lived a lifetime full of peace.

This is my journey as Lorrin’s mother. I have lost everything in my life that I thought was important. . . . I would never have chosen the life I have experienced. I endured rejection, rage, fear, and destitution. . . .I brought the best life I could to my daughter. I was privileged to be the one who witnessed her strength first hand. I brought life to Lorrin as she taught me my toughest life lessons.

A number of times in the book Karen talked about when Lorrin would “leave her body,” as if she were always thinking of the inevitable outcome she faced. “I had always known and tried to prepare for the simple fact that Lorrin’s body would not last as long as mine.”

Each day was precious. Nothing was taken for granted. All that mattered was that Lorrin knew she was loved by her mother and so many others.

It has been a wonderful experience getting to know Karen. She’s had to face the heartbreak no mother ever should. She saw her perfect baby injured and suffering and ultimately dying from those injuries.Now she’s taken on the mission of telling Lorrin’s story. It’s not just about what happened to her daughter because of the DPT vaccine, but also what Lorrin gave to and received from others.

If what happened to Lorrin, had happened to one of my daughters, I would want it to mean something. I would want others to know about my child, and that’s what Karen is doing. Lorrin lives on in the words Karen has written and the talks she gives. It makes her life rich and connects her to countless others.

Karen wrote, I am the lucky one. I have lived, really lived. She is my strength. It is for her that I try to be the best person I can, and it is for her I tell our story.

Karen told me, Life is but a coffee break. Lorrin taught me to be in the moment, to get up and take on the day.

###

On Saturday, March 22nd, Sylvia Pimentel held a book launch party for Karen Kain's book, A Unique Life Fully Lived, at her house in Granite Bay, CA. Sylvia and her husband Ken have two vaccine injured teen boys, Joseph 19, and Nicholas 16. There were approximately 60 people at the party, mostly adults, but a few kids too.

Most of the guests were parents of vaccine injured children. Half a dozen or so of the attendees were not personally affected by vaccine injury, but wanted to know more about Lorrin and Karen's story.

Before Karen spoke, Sylvia asked everyone to give a brief introduction and their connection to vaccine injury.

Sylvia described it like this: It was amazing that so many of our stories were so similar! Person after person spoke of trusting the system, and then witnessing their precious baby being injured. It was truly heartbreaking to absorb the enormity of the destruction that our "well baby visit" medical system has brought.

Karen explained,

I shared my story about how I navigated through Lorrin’s vaccine injury. Lorrin was much more than a statistic; she was a blond haired blue eyed Pisces who loved shopping, eating chocolate and God. Not in that order. I have hope and I am proud to part of allowing our children to grow up….healthy!

Here I was, in a room full of packed full of parents, 95% had their own story of vaccine injury. It was shocking to hear story after story being told differently and yet similar. The unnecessary disregard for our children’s health is only getting worse. What is to become of our children if we lose our choice? My sweet friend and advocate Dawn Winkler-Kinateder recounted her tragic tale of her baby who died at 5 months of age after following the vaccine schedule. The beautiful Fuller family talked about how alone they were when their son was injured twenty years ago. One new concern now is that doctors are telling moms to make sure they have anyone around their child vaccinated. This is called the “cocoon”. Even scarier is the number of families who have more than one child with autism. This is becoming a norm. I am shocked and gravely concerned and society should be also!

We all are survivors who have been ignored and our children’s lives seemingly unimportant in the world’s eyes have had society turn their backs on us.

Comments

You can follow this conversation by subscribing to the comment feed for this post.

I've been wanting to thank you very much for sharing your beautiful daughter's life with us and for your efforts to inform all of us about the NVICP.

I've been a little burdened by the juxtaposition of the government at the beginning wanting you to place your daughter out of your home apparently at great expense, but then making nickel-and-dime arguments with every item you request to help care for her. It's maybe a only superficial inconsistency that is not inconsistent if I had real understanding--something I'm not sure I want to understand--but I'm unable to consider this program to be anything those who set it up said it was meant to be.

And for those wanting to learn more about the VICP (Vaccine Injury Compensation Program) a.k.a. "vaccine court" - but make no mistake, it is not a court of law, but a government program where you do not have judicial rights - I would highly recommend a book that is set to be released later this year:

Thank you Karen for sharing your story with us! Lorrin was someone I admire greatly. I wish I had been able to meet her. What a strong, beautiful girl!
And what a kind and caring woman you are Karen. I am proud to call you my friend. And thanks for clarifying about the compensation by the VICP. 4 out 5 cases brought before VICP are denied. And many parents don't even know the VICP exists at all. And if you are one of the few awarded compensation, they make you jump through hoops for every expense. Parents do not get to spend the money as they see fit. The majority of parents who participate in the vaccine program in this country have zero knowledge of what they are agreeing to. This needs to change. Parents should have all the facts before they make these decisions. Thank you so much for telling your story.

I just wanted to thank everyone for your comments. Connecting with parents has empowered me to share my story. I hope that I can help families make decisions about how they care for their children and know the true story of vaccine injury. Thank you Sarah for bringing up the "award" for Lorrin. It is a painful topic when we put a price on our children's life. We did enter a judgement on March 13th 1998, but HHS pushed the payment to my family off until July. Lorrin was living in the hospital at that time not expected to survive. She received $250,000 for lost wages and $250,000 and suffering. She was also sued by Medical for $100,000 because our attorney Mr. Dodd forgot to ask for reimbursement for medical expenses that she had incurred while waiting for the settlement. The money went into the bank in a trust in her name. Lorrin's expenses to keep her at home totaled 17,000 a month. If I were to place her it would have cost $6,000 a day. Of course it was always my wish to keep her at home. Another part of the award is that we were monitored by the court on every dime we spent. Each year we received enough money to take care of Lorrin for a year. The 3 million that was not given to Lorrin is managed by a trust company and goes back to HHS upon the death, not to the parents. The parents are not entitled for any pain or suffering or any expense. It is all allocated to the child, as it should be. Thanks for bringing up this very important topic.

"Shoving it under the rug" reminds me of what happened to Vietnam Vets after exposure to agent orange. I'm not sure anyone ever had to pay for that scandal. In fact, people like Colleen Boyle continued on with new positions at the CDC even though she was intimately involved in the cover-up. The vets were shunned, and society frequently avoided dealing with the injured, especially the mentally injured. There was plenty of general guilt and a vague realization that some wrongs had been done (maybe not specifically tied to agent orange), but it was never satisfactorily addressed and brought to the forefront of people's thinking. I don't remember ever hearing an official apology. The big difference between the agent orange scandal and the vaccination scandal is that agent orange exposure ended for US citizens when the war ended (not for the Vietnamese). I don't see an end in sight for exposure to the toxins in vaccines. I don't think the vaccination scandal will die quietly like the agent orange scandal did.

I am one person who will never forget the vaccine injured. Even though my child fully recovered, I will never move on. The next vaccine injury could be a grandchild, or a close friend or a relative. Already in my extended family there are three children under 4 on the spectrum and 1 with severe anemia. Some people might think I am a dark sort of person for dwelling on the negative but I can't imagine how anyone can shove this nightmare under the rug. I'm amazed that officials guilt trip parents for not vaccinating because they supposedly put others at risk (although herd immunity is bogus) and yet doctors and the CDC mistreat vaccine injured children and their families. They are the ones that should be ashamed or in jail.

I am so glad that Lorrin had such a wonderful mother, and family, and that they gave her a full life. I am also glad that she did receive such a substantial payment from the vaccine injury compensation plan:

"Lorrin Kain was born on March 15, 1994, and was seriously injured by a routine childhood vaccination. She suffers from a severe seizure disorder, spastic quadriplegia, scoliosis and cortical blindness, and will require extensive medical treatment throughout her life. Lorrin's parents, appellants Karen and Thomas Kain, have been appointed as her legal guardians.
In 1995, the Kains filed a petition in the United States Court of Federal Claims seeking recovery under the NVICP. They were represented by attorney Andrew W. Dodd. The special master assigned to the case issued an award which included a lump sum payment of $841,174.65 and an annuity of over $3 million. The lump sum portion of the award included compensation for pain and suffering, lost earnings and unreimbursed medical expenses. Judgment was entered on March 13, 1998, after the Kains accepted the award on Lorrin's behalf."

I am the mother of a severely autistic child. I believe our journey began with an a vaccine injury. Fintan is the only child I had the flu shot with in pregnancy. Subsequent vaccine in his childhood caused more damage. I have heard Karen Kain speak before and was delighted to go to her book launch. It was unnerving to see how many parents of vaccine injured children there were from just our local area. I think her book is very important as vaccine injury can't be argued in this case. It is a good education to parents about the truth and living in this difficult situation to the very best on our abilities.

Had to wait an hour after reading this to post...crying too hard to post right away.

First, thank you Karen for writing this book about life with your precious daughter, Lorrin. And thank you for sharing your story with us that night at Sylvia's house. By sharing what happened to your daughter, and to you and your family, you are making a difference...so please don't stop.

Thank you, Anne, for writing about Karen's important book in such a moving way that honors both Lorrin and all of the vaccine-injured, whose body count climbs higher every single day that we continue on with our nation's dangerous, ineffective, and untested vaccine program.

To any parents reading this that are questioning whether or not to allow their children to be vaccinated, PLEASE, do your own research. Unless you see a doctor whose own child suffered a vaccine injury, it is highly unlikely that you will not receive any type of informed consent prior to vaccination. Therefore, it is up to you to diligently research and question vaccines, the theory behind vaccination, the business of vaccines (including the 1986 National Childhood Vaccine Injury Act), the ingredients in vaccines, and the sky-rocketing number of chronically ill and disabled children in our highly-vaccinated country, and it is a parental duty you must not shirk. There are now countless resources for you to consult, from books, to studies, to blogs, to movies...and perhaps most importantly, there are thousands upon thousands of us parents who have vaccine-injured children who desperately want to share our stories with you so your child does not suffer a similar outcome. Please, please, please learn from our experiences and do not let our children's suffering be in vain.

May God bless and magnify your work, Karen! It has been a pleasure meeting you a couple times at Sylvia's, and I look forward to seeing you again :)

Karen, you are one amazing momma and you just said something really important:

"if Lorrin was the 1 in 250,000injured and she took the hit for the team then why was my family disgraced and treated with such disdain."

That is the million dollar question. In no other instance is this the case. It speaks volumes about the dishonesty and conscious and unconscious ignoring of the situation. I think there needs to be whole articles from people such as yourself who have witnessed this treatment firsthand.

While meditating this morning, before I got up on this, the 20th anniversary of Lorrin's injury, many things popped into my mind…what if? What if I had educated myself and choose not to vaccinate? What would she be doing now? Would I be a grandmother someday? But the reality is that my life was forever changed in one minute by the choice to vaccinate. Every time I hear a story, about seizures and infants screaming that high pitched scream only a vaccine injured family knows, I think about what I can do. How can my voice/experience help? Lorrin's life will not be in vain, our voice will be heard. Back in 1994 I was alone, no internet, no Age of Autism, no Anne Dachel to share important information about what is happening to our babies. In 2011, I met Anne, LJ, Ginger to name a few.. I learned about The Age of Autism & The Canary Party. I realized that there were so many more children who had horrible gut issues, seizures and life destroying side effects from vaccine injury. On that weekend at The Autism One conference I was sharing my story about how I was treated by the HHS who had immediately agreed that Lorrin was vaccine injured. If Lorrin was the 1 in 250,000 injured and she took the hit for the team then why was my family disgraced and treated with such distain? The black hole of vaccine injury ripped my heart out. Everyone, even the doctors just wanted us to go away. Her life now deemed unimportant and mine also just for being her mother. In 2010 I made an agreement, in Lorrin's name, to go forward in love and do all that I can to raise awareness about the reality of vaccine injuries.Today I am constantly amazed by the brilliance, courage and tenacity that parents have while raising their unique children and still dedicate their time and efforts to making a change. It is my greatest wish that parents educate themselves and take care of their spirits and love their children, knowing that each child is important no matter their ability. It is an honor and privilege to share my story. Thank you Age of Autism, Anne Dachel and most importantly to ALL the children who have come before, now and in the future to help us change what we put into our babies. It is for you that I do all that I can to help parents Live A Unique Life Fully.

Anne, what a beautiful, yet gut wrenching account of what happened to Lorrin. It occurs to me that this could be the response to any and all of the media, bloggers, PR types, no matter what their point is. Just this. Repeat.